I'd love to preach to the choir that I have the secret sauce, the miracle drug that will heal all of those suffering from multiple sclerosis.
But unfortunately I do not. Damn it. (:
And ps: anyone who says they do, just run away. They're totally lying. Full of love perhaps, but lies.
Yesterday there was a great article in the Wall Street Journey titled "How Patients Really Can Help Heal Themselves". And while I couldnt read it wonderfully (blah eyes), I received a wonderful summary. It got me thinking, with what a powerful message behind it.
Here are some of my thoughts.
Im technically a newbie to this whole medical, MS world. But I have learned some thing so very powerful in the process of healing myself, and that is learning to listen to my body.
I had a wonderful/terrible way of learning this. Two summers ago (and then again last summer), when I was really sick (one of these days I will put some more definition in to what that really means), I spent about a month in rehab. Every day I had a team of doctors, a team of physical therapists, a team of occupational therapists, a team of speech therapists, a team of nurses, and a team of plasma exchange specialists asking me a simple question:
"how do you feel?"
This simple question had deep underlining messages; how did I feel translated to did that treatment yesterday work? Is this drug working? Do you feel better? Worse? That new machine, did you like it? What hurts today? Hows your energy today? Why is it low? Why is it high? Are you hot? Cold? How are your tremors? Have any sensation in your legs? Think you can walk further than 30 feet? Whats your favorite color?
My answers that I gave them couldnt just be "Im ok". They had to be legit. They had to be truthful. They had to be detailed and answer the what/why/how follow up questions.
My answers were my ticket home. I was not getting out of there until the doctors thought I felt good enough, until I passed a certain test. And the only way I was going to make it was by listening to my body on what worked and what didnt.
So that's how I learned to listen to the most powerful tool I had: my body.
It frustrates me that my body is literally attacking itself (the definition of multiple sclerosis...again, something I can more fully define at a later point). My immune system is eating my nervous system. That's so not cool.
But I have respect for my body. I love my body. And listening to it I have found has brought me from a wheelchair to walking. Kind of a big deal.
Listening to your body doesnt always bring good news. By listening to my body we've discovered that steroid infusions, a way to decrease lesion activity, doesnt work. That Ms management drugs dont work. That going gluten free, doesnt work. And on and on.
And then there are drugs that possibly do work a little, but the side effects are too awful. I was on a high dose of the wonderful/awful drug Klonopin. I was also extremely fatigued. So I lowered my dose and guess what, I gained more energy (more pain too but eh pain is normal at this point).
You are your best advocate.
Granted, I am not a medical person. I did not go to med school. I get my information from wikipedia. I google things like crazy and I can connect the dots. But Im no expert.
But I know my body best. I know when something just isnt working. I know when something is.
And this has caused some clashing with my doctors. I was on tecfidera (a ms management drug) for quite a few months. And I felt terrible on it. Literally just awful. My body tensed every time I swollowed the pill. And I use to do needles every other day. This was much worse.
I wanted off. This is a risk. But I knew my body would be better without it. And guess what, it is. My body does "feel" better. But it comes with a price, being that my ms is not being managed (not that it was doing any managing anyway. Stay tuned for my next post, playing with fire, where I will discuss how Im a ticking bomb with no ms drugs. It'll be a fabulous read).
Some interesting statistics from the article.
I approach the medical practice as I approach business: I am hiring you. There is a transaction for services (I am paying to hire my doctor). Thus, I have the upper hand.
You must enter your doctor's office with confidence. And granted, they are intimidating. They know a lot of information. They may not be compassionate. They may ask hard questions. But remember, they work for you. You are hiring them for their expertise. You have the final say. You have the disease.
Also remember, doctors arent perfect, they're human too. Trust them yes but double check. Sometimes they might not catch a drug interaction (there are great phone apps where you can put in all your medications and herbs and keep track of interactions, etc). Sometimes they might miss a test result. Sometimes they may inject you with a high risk drug, only to find out three hours later your blood results came back positive for antibodies (not that I know from experience or anything).
And last, tell the full truth. Tell your doctor every thing. I once had a nurse tell me in one of my hospital stays "there is no modesty in hospitals, only humility". I now take this quote to all my appointments. There is nothing I wont say (probably some things they wish I didnt hah). But I tell them every type of vitamin, herb, food, juice, etc, I take. Nothing is too small. Nothing. Plus, you might bring something to the table that could help research down the road.
At the end of the day, here is what we know: there is no cure for multiple sclerosis. There is also no right way to manage it. Some people find that diet helps. Some people find that medications help. Some people find that exercise help.
The moral of the story is you have to find what works for you. And it will take time. And trial and error. If something works for someone else, and not for you, that is ok. Because your body is different from theirs. Your disease is different from theirs.
This is your life, this is your body. Listen to it. Learn from it.
And who knows, you might just have the power to "heal yourself".
Love,
PS: Again I apologize for any misspellings or grammatical errors. My eyes are still recovering. Send them love. (: